As you know, if I am not here for a couple of days' it's because something had gone crazy..... and it did.

I received a call Saturday morning that Dad had falled. He hit his face (possible fractured bone in his face) and possible hip fracture. So I was off to the ER to meet Dad. We both arrived about the same time and he was in relatively good mood laying on the stretched, just a little confused as to why he was there since he didn't remember the fall at all. He did have a nasty looking place on the side of his face and there was some distortion there. He was complaining of something wrong with his leg but we couldn't pin point the actually location of the pain. So off to CT scans and x-rays. We were lucky and there were no broken bones. But there was a slight cranial bleed so the neurologist we were assitned wanted to admit him to the neurology floor for observation until the next morning. He assured me it was probably ok but wanted to be sure. Sister 2 had shown up at the ER and decided to go to the facility to check on Mom and get a few things Dad needed. On her way to the facility a lady forgot to turn left in a curve and ran right into the side of her car. She was not hurt but spent the afternoon dealing with wreckers and policeman.

But when Dad was moved he was moved to a new Cardiadic observation unit instead of neurology. Shortly afterwards Sister 2 arrived. I decided to leave her with Dad for an hour, get my phone charger and some supper. Before I could return she called me to HURRY~~~

Evidently the nurse saw the need to call another physician and get an order for an iv. The neurologist intentionally didn't order one because he didn't want them starting any iv's during Dad' sundowning in such a strang stressful place. In went the IV and Dad went off his rocker. Before I returned they had given him a massive dose of iv ativan. Then they came in and gave him another before I knew what they were doing. The nurse said there would be a THIRD injections and I said NO WAY!! At that point Dad couldn't not even lift his arms effectively let alone get up. So I listened to Dad's aggitated ramblings all night as he struggled to move. I was so ******. He finally settled down this morning about 8:30 am.... settled into a heavy drugged sleep. I waited a couple of hours for the neurologist to show up for rounds.

Just before sister 2 showed up today I went on a rampage. I told the nurse to page the neurologist and also the ER doctor that I really liked. I wanted to see one or both immediately. The neurologist came in first. I shut the door and told him I was tired of watching stupidity trickle down to the bottom and I was going to the top to get something done.... going to HIM. First I showed him Dad's IV and he flipped out along with me. He ask why it was there and I said they had given Dad two heavy doses of Ativan which explained his drugged stupor. He was further infuriated. With the massive doses of Ativan we would not watch for the tell tell symptoms of head injurty which was why Dad was there. He told me to hold on while he did some "homework" in the charts. I heard him at the nursing station going balistic!!! Just as he arrived back at the room the Er doctor showed up and we filled him in. He was furious because he agreed with the no iv and the drugs were excessive.

The three of us made a plan. The neurologist scheduled Dad for an Urgent CT stan. That way he would know if the bleed was getting any wrose. If nothing more showed up today then the ER doctor was coming back at 4 to release Dad if the facility would take him back in his ativan stupor. I had no doubt they would but called for verification and they told me to bring him back NOW!! They are so great! So I woke Dad enough to get some food and liquid in him as well as the meds he needed. I kept him clean and dry since he couldn't tell me when he needed to go. I did everything for Dad, and had him dressed in a chair at 4 PM. Good to his word the ER doctor showed up at 3:55. He refused to let the nurses do most of the discharge procedure and expedited the discharge process. Then I loaded my drunken Dad into my car and took him back home. He is out cold sleeping off the effects of the drugs as I type.

I have not seen a bed since yesterday morning.. I am once again preparing to write the customer service VP that I wrote about Mom's episode with the restraings.... and the neurologist said that he would validate everything I said. The nurses took it upon themselves to do more than authorized and then gave too much med because Dad was sundowning and they upset him. Beyond that point there was no help for me and Dad. I am just eternally greatful to the great neurologist and super ER doctor that put an end to this crazy two days.

The one interesting thing that did happen was the ER doctor let me see Dad's CT scan. If there was ever a doubt of the severity of Dad's dementia I don't have any now. The atrophy on that scan was astounding. Knowing it...and seeing it are two different things. While it was interesting to see it was terrifying to watch knowing that was Dad's brain missing much of the right side and a little less of the left. All I can say is WOW.....

I am greatful that Dad had no fractures but once again realized just how ineffective hospitals are at dealing with dementia patients.

Love, deb

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Sister's 3 and 4 and not oblivious because I keep them fully informed. I called each sister on the way to the hospital Saturday morning and talked to each of them several times a day with the last call to each on my way home tonight. What they do is their choices and what I do is mine I knew the ramifications when I moved them here and I am willing to do anything and everything I can.

What I do know, at the moment, is that I am not far from my bed!!!!

Love, deb

The following user gives a hug of support to Gabriel:luyingjie (01-24-2012)

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Thank you Martha and I did get some sleep.... I fell in the bed as soon as I typed here last night and slept for about 11 hours. When I woke up, let's just say it took me a while to get out of bed. After moving constantly for 36 hours, lifting Dad numerous times, and then laying completely still for 11 hours... I had locked up completely. But an hour later I am moving again.

I just hung up the phone from talking to the facility. Dad woke up enough to tell the caregiver he didn't want food or his meds, he just wanted to sleep!!! They said he was coherent but obviously in need of more sleep so they let him sleep. He was with me through the escapade and I know how I feel so I am sure he is right. I will check on him later to see how he is moving. They do have a wheel chair just in case. I'm telling you gals, this facility is phantastic!!

Love, deb

The following user gives a hug of support to Gabriel:luyingjie (01-24-2012)

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i am so glad he is back. what type of facility is he in? hospitals are terrible with dementia patients and they are also bad for regular patients in some cases. it seems like your strength is back and that is what matters right now.

Hi Deb...
I am just getting caught up here a little....have been busy preparing for "Back to School" tomorrow. My, what a tough weekend for both you and poor Dad. I am so impressed with how you handle his care.....I firmly believe a strong family support is so important when it comes to our loved ones being taken care of.
If a hospital, nursing home, anywhere sees that their patient is being well monitored by their family, I believe it keeps them more on their toes. Sadly, these hospital incidents still happen....how on earth these people are in these positions I dont understand. There is still so much to be learned about how to treat the elderly with dementia. It must have been really hard to see the results as you said.....god bless your dad....he is having a tough time. I am so glad you have found such wonderful people to take care of his daily needs....combine that with the love of such a wonderful daughter and he is in very good hands....

Unbelievable deb!! I cannot believe the hopsital would give your dad those mega doses of medication?? I just don't get it?? That is terrible. Why the heck did they do that?
What a journey that was for you too my friend!!! Glad you finally got the sleep you needed. Its amazing how far we push our bodies when we have to. Then after we just crash.

Dad is still sleeping off the effects of the meds the hospital gave him over 48 hours ago. I am not surprised. Sister 3 is a nurse and she had forewarned me that it would probably be tomorrow morning before he woke up. I did talk to the facility several times today. Dad was aware enough to talk to them between sound sleeping. Hopefully he will be up tomorrow morning. I plan to go check on him tomorrow.

Debbie, Dad is in a locked ALZ unit that is part of an assisted living facility. They don't have nursing home beds but do have nurses on staff 12 hours a day. They are absolutely wonderful. When I called them and explained the situation Sunday, after the doctor had said that the facility probably wouldn't take him back, they told me, as long as the doctor thought it was ok to discharge him, if I had to bring him back by ambulance, to bring him back "home". They would take care of him... and they have. I called them when I left the hospital and two caregivers were waiting at the curb with a wheel chair to help me get him to his room when I drove up. They told me last night not to come in today. If there was anything I needed to know they would call me but I needed a down day. And they have masterfully handled Mom through this entire episode keeping her at bay so Dad could sleep. I cannot say enough good about them!!!

In the meant time the hospital calls asking to speak to my father. I just laughed in the phone and said to the lady. That is just the latest in a long line of stupid things your hospital has done. My Dad has dementia and he is in a locked ALZ unit. But you have his daughter if you would like to speak to me. She proceeded to say she was discharge follow up and would like to know how my father was doing and what I thought of his care. Man did she get an ear full!!! I started by telling her that I was not sure how my father was because he was still sleeping off the overdose of Ativan they gave him. As for his head injury, we had no idea because we couldn't check neurological vitals when he was comatose from excessive ativan. And how did I rate his care.... you people just don't know how to treat the elderly dementia patient without trying to kill them. All she would say was Uh Uh Uh!!! Then I told her I appreciated her doing her job and following up on patients. I knew she was not the problem but since she ask my opinion, I was giving it. I already have my narrative written and tomorrow I call my "friend" in the patient complaint department. Yep, the one I got to know because of Mom's escapade at the same hospital in May.

I have several question. Dad's DNR did not get from the ER to the Cardiac Unit. It's hard enough to make that decision without having to argue with a nurse about the no code. I want to know why he was ever sent to the cardiac unit, especially in light of the fact that I heard a hospital employee instructing the staff to "get the patients who are ready to be moved out of here no matter where you put them so we can admit more patients". I want to know why the IV was ever put in. I want to know why the ativan was administered and who ordered both since the neurologist didn't order them. I want to know how you check neurological vitals when you don't come in the room and the patient is out of it on ativan.

Then I want to find out what their restraint policy is. They could not give Mom chemical restraints instead of the physical restraints. But they could overdose Dad with chemical restraints. Then when I put up the bed rails so he wouldn't fall out of bed I was told I had to put them down because that was considered physical restraints. But my bigger question is why do they agitate the demented until there is a need for restraints. Yes I have gotten some rest and I am ready to get some answers.

Caroline... that is exactly why I stayed with Dad while he was in the hospital. I only left for maybe half an hour and it was during that time that they chose to put in the IV and administer the ativan. Sister 2 was there but she was unaware of the decisions I had made with the neurologist or that she could refuse whatever they attempted to do. I have always been there when my parents were hospitalized and more adapt at running interference. As for hospitals not knowing how to treat elderly dementia patients... it is my mission now to make sure they learn!!

Pauline it is call standard protocol. They don't distinguish between the drunk and drug addict that become combative and the dementia patient. When you are young and high on drugs it takes that level of medication to knock them out. So Dad got the same dosage that they would give a combative druggie. Beyond that they don't understand dementia behavior. The neurologist knew not to try to start an IV in the evening when Dad was sundowning. But again I ran into standard protocol. When he landed in the cardiac unit... they always start an IV. So even though there was not one on Dad's orders from the ER, they found a staff doctor to approve it. Then when they attempted to place the IV Dad became combative. Instead of recognizing the dementia and stopping they just brought in several other staff members including a huge black man that scared Dad even more to finish the job. By the time they had finished he was so combative that they again got a staff physician to approve the order for the standard dosage of ativan for aggression with no regard to his dementia or the fact that he had a cranial bleed. What amazes me that Dad had NO orders for any IV medication. Then, when I showed back up and raised the roof, they didn't come back in the room because they had a combative patient and an irate family member.

Just a quick update before I go visit with my parents. I did file and official complaint with the hospital this morning and I have requested a copy of his chart. The two complains are still not resolved on Mom's visit in May and now I have a third to deal with. But I have to do this for every dementia patient that follows my parents through that ER and for Mom and Dad in case they have to go back.

Dad did take another tumble in the bathroom last night. When I was called I said "GOOD!!" The staff at the facility knows me well and just chuckled. It is good that he was up and on his feet which meant he was coming out of his Ativan induced semi consiousness. It was good that he was still peeing because that meant he was still hydrated. They got it!!! He went right back to bed and slept all night. But.... this morning he is up and dressed. He ate all of his breakfast. They are pushing fluids and giving him extra snacks. He is still very groggy and unstable on his feet so they have him on fall risk and watching him closely.... but he is UP! That is the best news I have had since Saturday morning

As for Mom, she's Mom. She's well set in her anger but well medicated and the staff has learned how to handle her. She is the best she can be for the condition she is in I will say that the separate rooms, though difficult to pay for, has been beneficial so it will stay that way at least for a while. I don't fix what is not broken!!

Now I just have to deal with the aftermath of the hopsital fiasco and that I can do! I do appreciate all your words of encouragement and your prayers.

Oh Deb,
Glad to hear Dad has come through his ordeal in the hospital, bless him. Good for you Deb, for pursuing this incident and the last one with the hospital. It is about time hospitals learn how to deal with dementia patients. I am always hearing on TV how many people are being diagnosed with this illness, so they should put some money into training and educating themselves. I always say healthcare is the most important tax money we can spend because doesnt matter who you are in this world, rich or poor, famous or the common man....you can always end up needing good health care.....

Just wanted to say - I BOW to YOU my sister!!!!!!!!!!! WOW!! Haven't been on the board for a few days - dealing with my family stuff - you are my hero! I am SO SORRY for what your dear dad had to endure, what you had to endure, but from one daughter beginning to deal with a dad with dementia to another - I SALUTE YOU

I learned so much just from reading this thread - info I will store away most certainly. I know my recent ordeal began with a 5 day hospitalization with my DSD in July. My sister and I took turns being by his bedside the entire time because - you just never know what's going to happen to them in a hospital. My mom and my other sister are worthless - but I am grateful to have a sister who is fabulous (better than me) in a hospital setting. Like I say about her - she could tell you to go to h^$# with a smile on her face, and you'd be glad to go!!! She's cute - petite - has a sweet demeanor - but she will protect her loved ones with a ferocity I aspire to! When I was in the hospital for my thyroid cancer surgery and had serious complications (stridor so bad I could hardly breathe - all the docs told me afterwards I was very close to having to have a trach), one night I was having a hard time breathing, and a physician's assistant wanted to give me a drug - I don't even remember the name right now - because she thought my lungs were congested - my lungs were fine! My throat was constricted and swollen so I was having a hard time breathing - but my LUNGS were FINE! My sis has asthma - it was a drug she was familiar with - she not only knew I didn't need it, she knew it would agitate me, and I already have panic disorder . She had to argue to the point that she had to "decline" the medication, and that got written in my chart. BROTHER!?! Since that event, I always tell my sister - jokingly and seriously - "you saved my life"!!!

Hope you're feeling a bit better as you are able to recover from a heck of an ordeal. Hugs & prayers to you!

I learned a long time ago TC that nobody cares for you like those that love you!! When the nurse told me they would be giving Dad yet a third dose of the medication in a couple of ours I just looked at her and stated.... "Over my dead body!" More than once I made it VERY clear what I needed for Dad. I spent years working in a long term care facility and 10 years directly involved in Dad and then Mom's care. I speak the language and that helps as well.

My sister that does help is not as adapt at medical situations as I am and she's not around enough to know all the information I have in my head. She was with Dad 5 minutes in the ER when she was calling me to come back because they wanted to know about meds. She was the one that innocently said that he might need something for aggitation later. That is when they decided to insert the IV. If I had been there I would have stopped that, requested oral medication, and perhaps most of this would not have happened, but I was gone less than an hour to get my phone charger and some food since I would be there all night. I left for 30 minutes Sunday to make some phone calls and clear my head and came back to her trying to feed rice to a semi comotose Dad. Nothing like rice aspiration!! She means well and at least she's there. The other two just expected phone updates.

It is important for everybody to know that you can refuse any medical treatment for good cause. They have to explain to you what they are doing and why. If you are ever unsure then request a consult and if you are ever sure then just say no. Arm yourself with information and dig for answers when it comes to the well being of your loved ones... and never be afraid to stand up, ask question, and say NO WAY!

TC, as you go through this with your Dad you will learn what meds he reacts to in which way. Ativan aggitates my Dad. Even though he is "out of it" he is thrashing around, talking jibberish, and picking at the air with his hands. It also takes a long time to get this med out of his system. Ativan and Xanax are both part of the Benzodiazipene family. Now I know to indicate that Dad has a sensitivity to Benzodiazipene and then he will not get them any more. I know those are the first meds a doctor goes to so beware of them.

And I totally agree that you don't need to leave a dementia patient in the hospital alone. They can't tell you what happened, they don't understand what is happening and can therefore become extremely aggitated, and they can't tell the medical staff what they need or are feeling. That is our job as their advocates.

As for me... I am spending the day doing laundry and cleaning. My niece is supposed to go by this afternoon to pick up a piece of furniture and to check on Mom and Dad. I will go back tomorrow before I go to a Nicholas Sparks book signing. It's an tradition with my nieces and I

I'm off to flip laundry!! I will absolutely keep you and your Dad in my thoughts and prayers TC.... I do know what you are going through

My husband was taking 9 different prescriptions for the two years leading to his death.

I has a wonderful friend and this is what she shared with me:

Get a binder. When prescriptions are filled, look up the item on the internet. Print out the contra-indications, adverse reactions, etc. File it in the binder
Do this with each one. If one is stopped and a new one added, do the same with new medications.

On a sheet of paper in the front of the binder, list each drug, how many times its administered, what is the dose, etc. When a new prescript is given, tell the pharmacist what all the other medications are that is being taken.

I also got a copy of each blood workup done on my husband each and every time. I posted them into the binder with the newest one on top so we can monitor his numbers.

I also carried a pad. There wasn't a doctor or nurse who touched my husband that I didn't have a name for listed in this pad. if instructions were given during that visit or hospital stay, it was written in the pad. I also acquired business cards for every doctor that was going to be the "standard" doctor for him. These cards were put in the front cover of the binder.

When a medical crisis occurred, I took that binder to the hospital. If I didn't want to carry the bulky thing, I ripped out the front page of all the meds he was taken and the pad I wrote things in.

This hospitals were amazed at how fast I was able to give them pertient info. Of course I was under stress and very frazzled and tripped over my words or was comotose in fear most times, they'd just reach out take the paper and pad, and make copies. It saved a lot of stress on me.

After my husband died, and due to the fact that I was trying to see if I had a standard for a major lawsuit, I got copies of his full medical records from both hospitals he was in at one time or another. All this and the binder is now for my kids since what he suffered from could become hereditary for my children, especially my son.

Having obesity in the family with many people make my kids more suseptible to it. Obestity caused diabetes in my husband which contributed to high blood pressure and all of it resulted in Progressive Kidney Failure which not being on dialysis resulted in him having a massive blow out of his heart.

so for all of you, get a binder, get dividers and start collecting vital information. It will help. Plus take video of your loved ones and then when you start to question yourself watch the video and witness the changes that is occurring. Because you are in it, you may not see it for what is there.

I do much the same Diane. I have a journal. It has all the business cards of anybody (medical, legal, financial) that is related to my parents. If I can't get business cards I write down names, addresses, and phone numbers. It also has all their personal information. I have copies of their drug list, living wills, and medical POA in there... and now copies of their DNR/MOST forms as well (since I had to argue with the nurse about that last weekend). I never leave home without it! Since the hospital fiasco with Mom in May I also write down the names of the doctors and nurses my parents come in contact with at the hospital.

I have a separate binder here at the house with volumns of medication information. It has a reconstructed medical history on both as far back as we could go, all the drugs they have been on, all the doctor's they have visited, bood work, and hospital stays. I also request complete billing information and chart information on all hospital and ER visits.

I have found that in the heat of the moment it's difficult to come up with information off the top of my head. It's easy to flip the pages and find what you need